Small Steps

Feeling a bit better today. Not much energy but with cane in hand went for a very short walk. Just half a block total, small steps but they were steps moving forward. The weather here today is beautiful and the temperature was perfect for a morning walk. It was nice to get out and do something that felt normal for a change instead of being cooped up in the house. I came back wiped out, but it felt good. The hand is better. Sore as the dickens and ugly to look at, but the swelling is much better. If it wasn't for the fatigue I'd feel like my "normal" self. Although, I'm not sure what my "normal" self really is anymore. We leave for Texas a week from today. I'm counting the days.

It's OK

What a day this turned out to be. Woke this morning with a right hand that had a red hard lump at the IV site that had infiltrated during IV steroid treatment a few days ago. Just over the time it took to make breakfast my hand swelled significantly and I knew I had an big infection going on. Fortunately, my MD has Urgent office hours on Saturday's. So, at 9 hubby and I were in the office. By 9:30 they were freaking lancing my hand open in two places and taking cultures. Needless to say OWWWWWW?!?!?! Pain, along with major frustration, and I had a good cry when I got home with a bit of "I GIVE UP" thrown in for good measure. Now, 8 hours later two doses of Vicodin, antibiotics and some rest I have a better mindset. :) (I had no more emotional stability or control over my frustration level at 10 this morning than a 2 year old an hour past nap time. I know it, I own it and after all I've been through the last two months I EMBRACE IT!). Now, all that being said, geesh I HAVE HAD ENOUGH! Just when I was starting to feel better and come out of the steroid UGH, this happens. Now I'm on two different antibiotics and Vicodin for the pain. (I can not believe how fast my hand swelled up and how painful it got. Well, yes I can. After three rounds of steroids in 2 months I have no immune system to fight. So the bug took hold and ran with the opportunity. QUICKLY). A third antibiotic is on standby. Fortunately, with the exception of the pain in the hand I actually feel pretty good. (Although that could be the Vicodin typing). My mind is the clearest it's been in awhile. My legs are still pretty unpredictable and doing some spasming, and I have TWF (Train Wreck Fatigue) with the most minimal activity, but I FEEL good. Which is a HUGE thing. My biggest has been keeping my frustration level under control. It seems I've been whacked every time I turn around lately. I'm a big believer that it's the positive mindset that will get you through the challenges we face and I've really had to struggle to hold on to that. Not the belief, but the mindset. It's hard to be positive when it seems that at every turn there is yet another challenge waiting to be faced. It's hard to keep the "well" filled so you can keep going to meet the next challenge. I've really had to struggle with that this past week. I've managed, since May when my journey turned rough, to be positive. No matter what happened. However, this past week that all changed. Everything just became too much. Too hard. I had a really bad couple of days and then, today happened. However, it was GOOD that today happened. This evening I had an epiphany. I NEEDED the emotional release I got when my emotional stability was reduced to that of a two year old. I NEEDED to cry, to vent, to be angry at God for a bit. I needed to verbalize out loud that this ISN'T FAIR! That I hate MS, I hate what it's doing to me and I hate that it's changing my life. I needed to acknowledge that I'm ANGRY. I needed to get everything I was holding in being "strong" and let it spew out all across the floor. Then, I needed to look at everything that was lying there. The anger that was no longer pent up, the frustration that was no longer gnawing me from the inside, the pain that was beginning to paralyze me and the fear. When I looked at it I realized something. I realized that it was O.K. It was OK to be angry, OK to be frustrated and definitely OK to be afraid. I realized my REAL problem was that somehow I had convinced myself that I am only strong if I keep all those emotions at bay. Under strict control. As if they don't exist. So, I did. Until the energy of doing so drained ME of every ounce of reserve I had to fight and keep being positive in my journey. I was defeating myself. Phew. Boy am I glad my hand got infected! The bottom line. It's OK to be angry, it's OK to be frustrated and it's OK to be scared. What's NOT OK is to keep it all bottled up inside. I learned when I keep it bottled up I'm actually smothering my own ability to be positive. There's not enough room inside to hold anger, frustration, fear AND positivity. I choose positivity...everything else can just lay there on the floor.

What a difference.

What a difference two days make. It's been 48 hours since the last steroid infusion. I feel like I'm coming out from the fog. Spent most of today sleeping recovering from 5 days of steroid induced insomnia. The metallic taste is finally gone from my mouth (YEAH) so I can sip lemonade again without tasting dirty pennies! While I'm really weak (I'm using the walker) I physically FEEL better. Those steroid side effects are brutal. I just hope this time it did it's job. Of course, time will tell. I see no improvement with my eye, but I'm fully aware it will take time to see if it worked and time for things to heal. I'm now starting to focus on Texas. I'm nervous about it, but very excited too. I've seen how Dr. Rhodes' treatment program works and I see no reason it won't work for me too. I'm literally counting the days until I go. Of course, I'm well aware that when I return I'm off of UCLA and discussions of Novantrone therapy (which I'm NOT looking forward to), but I'm going to do whatever it takes to get back on my feet again.

Another step forward

As I didn't receive a steroid infusion yesterday, I was actually able to sleep a bit last night. Fitfully with weird dreams, but at least it was sleep! I'm very jittery today which is to be expected coming off the steroids. My plan for the day is to do NOTHING. Rest, watch TV and recover. In both mind and spirit. Mark is home which also makes things easier. Just knowing he's in the house I rest better. I received my MS lifelines Magazine and The local MS Activities calendar in the mail yesterday so I'll read through them and see what I can learn :) So, today is a better day as tomorrow will be. Another step forward and the journey continues. Eight days until we leave for Texas and hopefully, a new successful treatment!

FEAR

I wish I could say my frustration level is lower than it was this morning. Unfortunately, it's not. Of course feeling like cr*p doesn't help. I know that by Sunday, other than the weight, most of the worst of the steroid side effects will be gone. So, on a physical level I'll be better. I'm not so sure the frustration over my limitations and how bad this exacerbation has been will be. I think the bottom line is I'm scared. REALLY scared. I'm scared that this summer is the beginning of a downwards spiral in my Journey with MS. Previously, I've always been fairly lucky. Until last year, I'm managed with just a few small "flare-ups" that resolved and never left me with any residual symptoms. Last year I started to have exacerbation's that left me with "symptoms". (Isn't ironic we don't refer to the problems as "damage" but "symptoms"). I now have a left leg that works when it wants to...or not. My balance is so unreliable that I have to consciously think about taking that first step when I get up, heck even getting up requires concentration more often than not. These are all things I can and will deal with. The real issue for me right now is fear. I have to somehow find some perspective, some strength so the fear doesn't paralyze me. Letting the fear take over when dealing with any issue is what will do you in. I know that. Once you allow fear to take control, you've lost and you have allowed yourself to be defeated. WHICH I REFUSE TO DO. However, I'm also tired. Very tired. Of course, I have my faith and I turn to God knowing that He will take care of me. But right now, at his moment, I feel as though I'm alone in a deep forest and those trying to reach out and help are simply to far away. I can hear their calls of support and encouragement but ultimately I am alone. I alone am experiencing my Journey of MS. Everyone else is a supporter and spectator, although I can't imagine how painful it is for them to be unable to do more. I know my husband would take this on himself if he could. I am so glad he CAN'T. I have to fight this fear and find my strength alone. No one can do that for me and I will do it. I won't just do it for me though. I'll fight the fear that wants to take over for my husband, my family and my friends. I'll do it because it's through their love and support that God gives me the stregnth to keep walking this journey without giving up.

Angry

Just returned from my morning MD appointment. I gained TWENTY FIVE pounds during this round of steroids. TWENTY FIVE FREAKING POUNDS. No wonder I can't breathe and feel like poop...heck I'll say it CRAP. I HATE MS!!!! I really try to keep my spirits up and keep a positive outlook, but right now it's very much a challenge to do so. Of course, I realize part of this is also the steroid personality "meanness" that comes with steroids so it will pass in a few days. Part of it is that I've just had a terrible summer with an exacerbation that own't quit. I miss my mobility, I miss my ability to come and go as I want, I miss my energy level and my activities. I miss my job and I most of all miss being the wife that I am to my husband when I'm NOT having an exacerbation. I miss being ME BEFORE MS. Before this stinking journey began. O.K. having had my rant now what? Now by goodness I AM going to allow myself to wallow in self pity for about an hour or so. Then, I'll regroup and carry on. Putting one foot in front of the other with determinination to do everything I can do to move forward head high. I have to admit though, sometimes I get tired of the fighing, the struggles. Sometimes I just don't have the energy to take that step. Are you listening God?

Special Contributor

You'll notice a new name under Contributors: Marybeth. Marybeth will be posting information regarding the treatment I am going to Texas to start on the 7th. As Marybeth has been receiving the treatments for several months now I felt that she would be much better to explain how it all works. I'm looking forward to reading her post. THANK YOU MARYBETH!

Round 3 infusion complete.

Finished the last infusion about 30 minutes ago. IV out, and I'm trying to eat some cream of wheat. Every bite tastes like I'm sucking on an old penny. Even Altoids doesn't help the terrible taste in my mouth. Drinking fluid? Forget it right now. Can't even begin to describe how awful liquid tastes. YUCK. I've really puffed up with this round of steroids. All I can get into is a pair of sweats. At least their comfy! Hopefully this is the LAST round of steroids EVER! OF course, I hope that every time. I'm going to spend my day being still and quiet. Just resting.

Off to Texas to try another treatment.

As I've posted on here previously, there is a physician in Corpus Christi Texas who developed a machine (approved by the FDA) for use with patients with chronic pain conditions.(Of course considered experimental for MS so the insurance company won't pay because I don't have a chronic pain condition diagnosis). (See the link area for the link to Dr. Rhodes). He has also has very promising success with helping MS patients control their symptoms using the machine as well. Apparently the machine stimulates our body's to make neuropepides, which not only increases the amount of neuropeptides you have, but also increase blood circulation which aids in healing. I have requested an MS patient who has been using the machine for several months to post a comment here. She can explain at this point much better than I can exactly how it works and what it's done for her. My husband and I will be heading to the clinic next month. I of course, will travel with lap top and blog about my experience.

Is there anything worse than....

STEROIDS?!? I'm going to be starting the last infusion in the series of 5 in about a half an hour. Saying I feel like death warmed over is an overstatement. I don't even feel that well. The heartburn is do bad I feel like I'm on fire from the throat down to by belly button. My stomach is cramping and has been all night (lovely) and my mood is so black that I feel as if I could erupt into a plate throwing rage at in moment with no provocation a tall. PERFECT. The only bright spot is that I'm alone, so there is no one here to be on the receiving end of my sparking wit and personality today. At least today is the last infusion so I'll start feeling better by tomorrow night and by Sunday will be almost human again. I just wonder. How much hair will I have left by the end of next week??? Thank goodness for weeks!

Steriods SO Suck

My home health nurse just left. We got lucky. Only one stick to get the IV going. Of course she had to use a 24 gauge (TINY) as I just don't have any good veins left, so the infusion will take a bit longer. As I watch the slow drip of the drug and taste the dirty metallic taste in my mouth I'm glad I only have one more infusion after this one...for this round. Every time I go through steroids I swear I'll never do it again. It's brutal. Sucks the life right out of me. It jacks me up so high I don't sleep more than 2-3 hours (broken) for 5-6 days. It's like I've consumed nothing but espresso by the potful for days while I chain smoked! I'm shaky, have heartburn from H*ll even with the Prilosec, and the awful taste in my mouth that ruins the taste of any food....even chocolate! I know that the second day after the infusions stop is the crash and burn day. I'll be totally worthless and sleep constantly for two days. At least I'll sleep! No improvement with the eye, but I don't expect to see any for a bit. I think the pain is easing up around the eye though, so that's a good thing. I still have an area that has a spot. It makes me automatically take my glasses off to clean them as my brain things it's something on my glasses that's causing the spot. The colors still aren't right either. Time will tell what comes back and what doesn't.

Another bump.

Darn IV went bad. Waiting for my home health nurse to come over to restart the IV. IVs HURT and I'm a tough stick on top of it. Not a good morning. No sleep because of being wired from the steroids and now my dose (which is usually infused BY 9 am) likely won't be done until this afternoon. . I'm also irritable as all get out. Not fit for public consumption that's for sure. At least I recognize it. My memory is getting worse as well. Thankfully I know that this time it's related to the steroids and not a worsening of the memory issues I have as a result of the June exacerbation! At least I only have 2 doses to go. I'm still waiting for the insurance authorization to see Dr. Geisser at UCLA again. Darn insurance company's. URGENT referral can take 3-5 business days for approval. Then they have to notify your MD, who in turn lets you know. Then it will depend on how quickly Dr. Geisser can see me. The journey continues......

Inspiring Story for All of Us.

My mom sent me an email yesterday that I wanted to post on here. I don't know who the original author was as it was an email that has clearly circled cyberspace. It included pictures which I will not put here, simply because I can't figure out how. I chose to post it because it is an email of hope. It is also a reflection of how I choose to walk my journey with MS:

This is a wonderful story for those of us who will lose or have lost a string or two along our way. (And who hasn’t from time to time?)
On Nov. 18, 1995, Itzhak Perlman, the violinist, came on stage to
give a concert at Avery Fisher Hall at Lincoln Center in New York City.
If you have ever been to a Perlman concert, you know that getting on
stage is no small achievement for him. He was stricken with polio as a child,
and so he has braces on both legs and walks with the aid of two crutches.
To see him walk across the stage one step at a time, painfully and slowly, is an awesome sight.

He walks painfully, yet majestically, until he reaches his chair.
Then he sits down, slowly, puts his crutches on the floor,
undoes the clasps on his legs, tucks one foot back
and extends the other foot forward. Then he bends down
and picks up the violin, puts it under his chin, nods to the conductor and proceeds to play.
By now, the audience is used to this ritual. They sit quietly while
he makes his way across the stage to his chair. They remain
reverently silent while he undoes the clasps on his legs. They wait until he is ready to play.
But this time, something went wrong. Just as he finished the first few bars,
one of the strings on his violin broke. You could hear it snap - it went off
like gunfire across the room. There was no mistaking what that sound meant.
There was no mistaking what he had to do. We figured that he would have
to get up, put on the clasps again, pick up the crutches and limp his way off stage
- to either find another violin or else find another string for this one.
But he didn't. Instead, he waited a moment, closed his eyes and then signaled the conductor to begin again.The orchestra began, and he played from where he had left off.
And he played with such passion and such power and such purity
as they had never heard before.Of course, anyone knows that it is impossible to play
a symphonic work with just three strings.
I know that, and you know that, but that night
Itzhak Perlman refused to accept it. You could see him modulating, changing, re-
composing the piece in his head. At one point,
it sounded like he was de-tuning the strings
to get new sounds from them that they had
never made before. When he finished, there
was an awesome silence in the room. Then
suddenly people rose and cheered.

There was an extraordinary outburst of applause
from every corner of the auditorium. We were
all on our feet, screaming and cheering, doing everything
we could to show how much we appreciated what he had done.
He smiled, wiped the sweat from this brow, raised
his bow to quiet us, and then he said not
boastfully, but in a quiet, pensive, reverent tone . .


"You know, sometimes it is the artist's task to find
out how much music you can still make with what
you have left".......

What a powerful line that is! It has stayed in my
mind ever since I heard it. And who knows?
Perhaps that is the definition of life - not just for
artists but for all of us. Here is a man who has
prepared all his life to make music on a violin of
four strings, who, all of a sudden, in the middle
of a concert, finds himself with only three strings.

So he makes music with three strings, and the
music he made that night with just three strings
was more beautiful, more sacred, more memorable,
than any that he had ever made before, when he
had all four strings.

So, perhaps our task in this shaky, fast-changing, bewildering world
in which we live is to make music, at first with all that we have,
and then, when that is no longer possible, to make music with what we have left .

Steroids Day 3

UGH. The steroid brain fog has arrived. Thick as pea soup. I'm lucky I can remember my name. Add that to the cognitive symptoms MS has given me this summer and I can't remember anything. Just enough to know it would not be safe for me to get behind the wheel of a car right now. Add the steroid shakes to hand that already don't work right and yep, I dropped one of my nice bowls tonight. Thank goodness it didn't break. So it's plastic for me again! As if that isn't enough. My IV went bad this evening. So the home health nurse has to come back in the morning to restart it for the final two infusions. Any bets on how many sticks it takes this time? No sleep and steroid moodiness does not a good combination make. Thankfully, I have the most understanding husband. Of course he struggles with the MS as well. While it's MY disease it's OUR journey. It's very hard for him to watch me struggle and not be able to make it all go away. In some respects I think it's harder on him that I'm NOT a complainer. I tend to keep everything inside. Even when he can see I'm clearly NOT feeling well and am struggling, I'll smile at him and tell him I'm fine. Which makes it more significant when I DO tell him I feel like crap and need help gettin in and out of the shower, etc. Yet, part of that is me trying to protect him as well. I know how badly he hurts watching me struggle and I try to spare him that as much as I can. Which is why I'm glad he left this afternoon on business. It was very hard for him to leave as he knows the next few days will be the toughest for me, but life goes on. Whether we want it to or not. Sometimes the only thing that keeps my world from feeling like it's spinning out of control in the midst of my journey is the normalcy of regular routine. I NEED him to keep to his routine as much as possible. Then at least one part of life remains "normal". I also have wonderful friends that always descend when he's gone on a daily, sometime twice daily basis to check on me. That make him feel much better, and me too as well.

On a really positive note the Neurontin seems to really have the muscle spasticity under control. I had a few really mild spasms today, but they didn't hurt. They were mearly annoying and I could actually walk during them. I've NEVER been able to do that before. That is a HUGE improvement! I still have the weird numb area on my right outer thigh, but at least my right heel isn't numb anymore. So, for every jump back there is an inch forward!

Research. It's really a crap shoot..that leads back to HOPE.

Thank goodness we live in the Internet age. Especially when your up with steroid insomnia. I've spent the last hour doing some reading on several MS blog and forum sites regarding the different treatments for MS. They are all filled with information about the first line meds. The CRAB's(Copaxone, Rebif, Avonex, Betaseron). I have been on Copaxone and Rebif and of course more steroids than some ball player out there. Once it's determined the first line meds aren't as effective as they need to be, you move on to the big guns. However, the reality of what I'm learning is that all the treatments are basically crap shoots. There is no one treatment that can hold the MS back. It may corner it for awhile, even a few years. Yet MS always seem to seems to come roars back when folks least expect it. While the reading doesn't really give me much encouragement. It does reinforce that it could be a lot worse. So in the quest to remain mobile WITHOUT ending up in a chair, it all comes down to weighing the risks of the treatment vs. the risk of no additional treatment. I know that my body can't continue to exist on high dose steroids like it has this summer. Yet it's only a matter of a few weeks after a steroid infusion that the MS strikes again. So obviously, it's taking more than Rebif to keep it at bay. I'm already losing my hair because of all the steroids. It literally falls out by the hand full. Just when the steroid weight starts to come off....well it ends up back on with the next dose. After just the second dose of this series I can't wear my wedding ring :( So, for me, I'm at the point that the risks of NOT being aggressive with treatment is more frightening than the path the journey has taken me on this summer. I feel my journey has come to a Y in the road. Either I continue exactly as I am now in one seemingly continues exacerbation. In fact, for me, it's not even an exacerbation. It's like every day there is a new symptom, a continuum. No longer are there periods where I seem to get better between new symptoms appearing. I feel if I choose the fork in the road in which I continue exactly as I am doing now, I'm at risk of becoming permanently disabled and unable to return to work. The other fork is just as scary in it's own way, yet there seems to be more hope down that path. Granted, the treatment can often seem worse than the disease, just going through back to back steroids is brutal enough. The thought of chemotherapy that lasts literally years isn't a pleasant one. However, if it means no more exacerbation's, no more new symptoms for as long as I'm on it. Well then that buys 2-3 years of more mobility. Who knows what will be available in a few more years. They are having wonderful results with stem cell replacement with MS. SO, perhaps it's just a matter of time before they can figure out a way to actually regenerate the damage. The point I guess is that we each have to come to terms with what were going through and hat were willing to go through to maintain our quality of life. I'm a scrapper. I refuse to give in. As long as I can I will fight to be able to live my life and not become a captive of this disease. I'm often asked how I can stay so positive and keep going on. My response is how can I not? Everyday bring new possibilities, new hope. The journey ISN'T easy, but I believe that it's when you give up and give in that your done. Not only with MS, but with life in general. Life ISN'T fair, but it's worth fighting for. It's worth living it on your own terms and putting your best effort in everything you do. For me I'm lucky. I have a strong personal faith that carries me through my life. I can't imagine anyone going through a journey like this without faith in God. So, I'll continue the journey with as much Grace as I can and keep fighting every step of the way. I will embrace the victories and weather the rain.

Benefits of MS

Hey, I actually found a benefit to having MS! Steroids always take everything out of me and wire me at the same time. Not a good combination. On top if it it makes my heart pound with the least bit of excitement or exertion which further limits my ability to get around. (not to mention the MS limits that all on it's own)! However, being "wired" I just had to MOVE and get out of the house. Mark wanted to show me something at Home Depot...here's the benefit of MS. Even with the cane there was no way I could walk around that huge cavern. My chest was bounding just walking from the handicapped spot to the door. So I rode around on one of those electric orange shopping carts. LOL. At a whopping 2 miles an hour! BEEP BEEP. Of course with the cane in the basket no one shot me any of those "your don't LOOK handicapped glares". So, I had an outing (Even if it was Home Depot) and at least got out of the house. See. Even having MS has it's perks! LOL

Monsters and Faith

Sitting in in my comfy recliner, IV pole at my side watching the steroids drip in. Was finally able to start dozing about 4:30 this morning, and dozing is all it was. Gave up at 7:00 and figured I may as well take my meds and start the infusion. I also took a Prilosec this morning a few hours ago. I'm hoping that if I keep on the course of Prilosec through the infusions and for a week afterwards the heartburn won't be as bad. No muscle spasticity at all yesterday on Day 2 of the Neurontin. Today I move up to the max dose of 300mg three times a day. Of course, the no spasticity yesterday could just have been a coincidence, but I'm hoping it has EVERYTHING to do with the Neurontin and nothing to do with coincidence! Muscle spascity is just so incredibly painful. I can't even begin to describe it. Being awake all night left my mind plenty of time to race. Night time can be such a scary time. All the monsters are out prowling and the one's in your mind don't bother to whisper with everyone else asleep. They pipe up in full conversational volume. After all, it's so quiet there's no need to shout. They taunted me with all the "What if" questions all night. "What if this doesn't stop the Optic Neuritis, What if there is permanent vision damage, What if the MS is not going to stop and is on a steady course, What if you can't go back to work, What if, What if, WHAT IF?!?!? The answer is I don't know. I've already lost 100% of my hearing so the loss of any vision is very scary, but strangely enough I really don't worry about the vision. I KNOW God wouldn't allow the loss of both my hearing and my vision. As for the rest, He will allow whatever he decides. It's my job to remain faithful and do my part with treatments and trying to do what is in my power to do. Which frankly, right now, doesn't seem like a heck of alot. Hence sitting here in my comfy recliner with yet another IV in watching the steroids drip in. I hope this is my last round of infusions for a very long time. I'll know more about my options when I get down to UCLA. That scares me the most I think. UCLA. It was Dr. Geisser that diagnosed me and my fear is she will tell me the CRABS are no longer working for me and it's time for the next level of treatment. It's not the treatments that bring the fearful thoughts. Of course I don't WANT to have to step treatment up, but what scares me is what if the MS is starting a progressive course. If it is, then this summer indicates it's a pretty steady one. As along as I can remain mobile with my mind, I can deal with everything else. Because of my faith, my husband and the incredibly supportive circle of extended family and friends. Trying to keep everything in some kind of perspective isn't easy. Especially when the monsters come to chat, but I know that if I don't keep my faith and my perspective then MS has already won. I simply refuse to allow that to happen. One day they WILL know WHY MS develops. When they know the WHY then they will know the HOW to prevent/stop it. That break through may not come for another 20 years, or it could be announced next week. (Personally I'm hoping for next week, but not betting the bank on it). When the announcement comes I'd like to have enough mobility to dance a "jig" and enough mind left to understand the breakthrough!

Steroids and new symptoms

I hate steroids. Have only had the first infusion and already I'm wired, hot, and the feeding frenzy is fighting to commence. It's 12:00, I'm usually in bed and asleep by 9:00, which means the insomnia is starting as well. I still have 4 more infusions to get through. Going to be a long few days I'm afraid. At least the GI symptoms aren't bad yet. My dog has already given up on me and went to bed, the cat is jumping on and off the bed. I'm sure she's wondering why I won't settle down. Hubby is up on his lap top. (He's a night owl anyway). The good news is...no muscle spasticity...so far...today. Have had three doses of the Neurontin. Hopefully THIS trend will continue. It's been wonderful not to have even the smallest spasm today. Normally my legs are spasming off and on all day. So, I'm taking that as a really good sign. As I said in my earlier blog today it took three sticks to get my IV in (I felt so bad for Tracy, my home health nurse. I'm a REALLY hard stick so I always expect 3 or four tries). It's already itching and bothering me, so I hope I get at least three infusions out of it before it has to be restarted. I still have a weird numbness on the outer part of my right thigh. It extends from about two inches above my knee to about 6 inches below my hip and covers the entire side of my thigh. The skin is numb, but touch is uncomfortable. Strange. At least the right heel numbness seems to have gone away that I was experiencing last week. Having symptoms on my right side (other than the eye and muscle spasticity) is new. Previously all the muscle weakness and numbness has always been on the left. Especially the left leg. I also noticed today that I seem to be having more problems with the left foot. No surprise there considering the left leg and foot have been my biggest problem. I'm having to pay careful attention to how I walk. My gait is definitely off. No difference in the eye yet, but I don't expect to see one. Ibuprofen seems to take care of the eye discomfort so it's more of a nuisance. Heck, MS is a nuisance. Seems like every time I turn around it sends me back into a tail spin. I keep trying to focus on the positive. There are so many other diseases, far worse, that I could have. It was when I lost my hearing. Could have been worse, I could have lost my sight. If I had a choice, I would have chosen deafness over blindness. As I would have chosen MS over ALS. I know I'll get through the next week. It may not be fun, but I will. I'll also get through everything else MS and life will throw my way. Just another step in the journey. Beats the alternative of not having a journey to take. Although, I'd much rather my journey involve a trip to Hawaii instead of the path of MS!

Infusing

Ahhh the joys of IV's. Only took 3 sticks. Steroids are infusing as I type. Have the lovely steroid taste in my mouth that even Altoids won't get rid of. I can feel the hair on my face growing with each drip. I swear with three rounds of IV steroids in less than 2 months I could probably grow a full beard! Thank goodness for waxing! (Gotta have a sense of humor). Why is it though, that I can now grow all the hair I cold possibly want on my face (NOT that I want any there), yet it causes my hair to fall out on my head??? I know, Gods sense of humor. Keeps us humble. Nothing more humbling for a female than Of course, looking on the bright side wigs! I can be a red head with long flowing locks one day, a blond with a bob the next! That could actually be fun. You see it's all about perspective. Of course, my perspective by day three of steroid infusions are likely to be very different!

Random Thoughts

Sitting on my recliner waiting for the home health nurse to come. Dreading the attempts to start the IV. Wish I could say the anticipation of treatment is the worst part. However, from personal experience I know that the anticipation is nothing compared to the effects of the treatment. Took my second dose of Neurontin this morning and will take another tonight. Starting tomorrow I take it 3 times a day. I should know within a few days if I see an improvement in the spasticity. For those who have never had the experience of muscle spasticity I'll explain. I'm sure you've had a Charlie Horse. You know, when your calf muscle locks up and no matter what you do you can't get rid of it and so you hobble around cursing. Now imagine having a Charlie horse of your entire leg, up to and including your hip. The spasms are so bad that your ankle turns inward to such a degree that it looks like you have a broken ankle while your toes spread out further than nature intended. You are in such pain all you can do is lie there and cry. Mine last approximately 40 minutes with no relief. They will let up for about 10-30 minutes then start all over agin. This goes on for hours. Welcome to MS spasicity. It's not limited to your legs either. It has hit my arms as well as my chest area. I will have what feels like a band that tightens around the left side of my chest. It often makes it feel like I can't take a deep breath. Hence, trying the Neurontin. Anything that makes the spasticity go away, or even ease up so it happens infrequently instead of almost daily is a Blessing. The old saying, "what doesn't kill you makes you stronger" comes to mind. I agree, but it also makes you tired. I admit I get tired of constantly fighting. Some days I don't know where I'll get the energy or strength to continue the fight. When that happens and I can't find any positive to focus on, I pray. Those are the days when I know I just can't do it anymore and God picks up the slack. Today is one of those days. I'm tired. I'm tired of fighting, tired of hurting with the spasticity, tired of exacerbation's, the numbness, the difficulty with balance and walking, tired of yet another challenge (optic neuritis), tired of putting one foot in front of the other to continue the MS journey. Things look bleak. More steroids, 3 physicians have now recommended the chemo route and if Dr. Geisser also recommends it then I'm chemo bound. My hair is already falling out in clumps from the amount of steroids I've had this summer. Finally had my hair cut really short last week. My stylist was shocked when he saw my hair. Wig time. With all the side effects why could just one be weight LOSS? THAT would make it almost worth going through! I've thought of saying forget it...NO MORE. Then rationality kicks in. What if I really said no more? Imagine..no more shots, no more steroids. Talk about exacerbation's! If the treatments and meds I'm on now are barely keeping the beast at bay, imagine the havoc that would be unleashed if there was nothing to try to protect me from the beast that is actually my own immune system turning against me. No thanks. The goal is to stay mobile as long as I can. So, I continue the journey in my personal battle against MS and in reality my own body. How awful when your own body is what is fighting you. One one hand, it explains why I'm never sick. I have an awesome immune system. Unfortunately, that same wonderful, strong immune system is wrecking havoc on my neurological system. Well the nurse is here......more later.

Reprieve......

Not starting the steroids until tomorrow morning! Yippee...one more night. Started Neurontin tonight...hoping that it will help with the muscle spasticity. The Baclofen wasn't working anymore. One step at a time, hoping to manage one symptom at a time. Today we take on the spasticity...tomorrow the Optic Neuritis and the exacerbation.

Waiting.....

Saw my primary care physician this morning. Because I live in a rural area Dr. Hall is the one who coordinates all my medical care. Way above and beyond the normal coordination your average primary car physician does. In addition to referrals etc., she also directly oversees a lot of the treatments that would normally be done in a specialists office. Simply because I live so far away from the specialty centers (3 hour drive each way to UCLA MS Clinic). Thank goodness she's awesome. She detected a bit more weakness on the left side (I hadn't really noticed. Other than bumping my left ankle more when I get into the car, so now I'm often lifting the leg when I get in) and a change with color perception on the right eye. Otherwise, everything is good :) I'm now waiting to hear from the home health agency. The pharmacist already called me and told me that the home health agency has my meds and IV supplies (big freakin yipee). My husband took me out to eat after my appointment. I deliberately consumed a spicy mexican lunch (with extra Tabasco) as I know that once the steroid infusions start I'll have major heartburn and other wonderful GI problems. Which will require large amouns of Maalox. I'll be lucky if my stomach will tolerate soup for the next 5 days. Add that to the steroid induced feeding frenzy my body craves and massive heartburn is probably a blessing. Prevents me from consuming the food my body will want. I expect I'll be doing quite a bit of blogging over the next few days. Steroid induced insomnia at 3 in the morning tends to lead to more blogging. So now, I wait to hear from the home health nurse....wonder how many sticks to start the IV this time....

The Journey continues.......

Saw my new Opthamologist today. He was fantastic! I admit after my experience with the new Neurologist last week I was more than a bit apprehensive about how he would be. He spent time talking to me, did the exam and then gave me the news I was really expecting, but hoping not to hear. I've developed Optic Neuritis. In fact, he stated I'm in the midst of yet another MS exacerbation. He then called my regular physician, told her he wants me on 5 days of IV steroids ASAP and wants me back down to UCLA. He feels the medications are no longer helping me. (Rebif). He wants me evaluated at UCLA on an urgent basis. I already knew the treatments we no longer being effective. In fact, we had switched from Copaxone to Rebif in June when I had my first exacerbation of the summer. This round of IV steroids will be my THIRD in less than 2 months. To say that right now I am discouraged and disheartened is an understatement. To say this has been a rough MS summer is also an understatement. I'm resting, not pushing myself and staying out of the heat. I've done everything I'm supposed to be doing, yet the MS has been relentless. Muscle spasticity has become my constant companion along with the pain it brings. I've given up trying to do my cross stitching as I don't have the fine motor control in my hands to stitch. I have to be very aware of how I move and walk in order to avoid tripping and falling. Fatigue is a constant, no matter how much I rest it doesn't seem to be enough. Now this. Optic Neuritis. For me it manifested with pain around the eye, blurred vision and a decrease in color vision in the right eye. I absolutely refuse to give into self pity. Frustration...absolutely. In fact, I'm down right angry. I'm doing everything I'm supposed to be doing, but MS marches on. Reminds me that I DON'T have any control over this disease. It will do what it will do. However, I will not allow it to DEFEAT me. I will do whatever it takes to rein the beast of MS in. So, I will do yet another round of IV steroids even though the ugliness of the previous round is still very fresh in my memory. I will make the 3 hour drive each way to UCLA to see Dr. Giesser. Knowing full well that too many physicians have mentioned Novantrone to me in the past month and it's very likely Dr. Giesser at UCLA will also bring it up. If the CRAB's (Copaxone, Rebif, Avinox, Betaseron) don't seem to be effective for me anymore, I don't see much choice. I just know I'm dreading the next week....sticks for the IV, Steroid side effects...oh well. I have a 9 am appointment tomorrow with my MD. The journey continues......

Another round of appointments

Tomorrow I see the Opthomologist about the ongoing problems with my right eye. Problems with my right eye is always the trigger point for IV steroids. Whenever I have a serious exacerbation (unlike the "numerous" ones I guess), my right eye is always affected. I lose depth perception and part of the field of vision. After the last exacerbation I never regained my full vision back, and I still have intermittent pain around the eye. Hence the visit tomorrow to the opthomologist. He is new to me as well. I hope it's a more positive experience than the visit with the neurologist.

Frustration of MS (For you MB)

One of the most frustrating aspects of MS is the uncertainty. Will the disease progress? How far will it progress? How often will I have an exacerbation? When will I have an exacerbation? What triggers an exacerbation? Who can help? MS is a disease filled with questions that begin with Will, How, When, What and Why. Unfortunately, most of these and other questions don't have definite answers. Just when we think we've figured out the program/treatment that works for us and we have our MS under control, MS reminds us that IT is in control. It was simply ALLOWING us to live our life. I was reminded of this fact today. Not because of my own recent struggles, but because MS has once again reared it's head in someone very close to me. I've watched her very successfully find a program that works for her. She's active. Rarely battles TWF anymore, looks great and as a result of her recent success with her treatment (non-traditional) her mental outlook is so positive, you can't help but be positively motivated when you have any contact with her. I received an email from her today that she is in the midst of an exacerbation. Having numbness on one side of her body and her feet. Needless to say, like the rest of us, she is disheartened and her own private voices are whispering. As of today she has decided, after talking to the neurologist on call for her regular physician, not to do steroid treatment. I, for one, understand that decision. Steroids are tough on the body. Especially when they are given by IV. She an I are very much alike in how we battle our disease. We both tackle it head on, refusing to give in. We also tend to wait longer than we should before we "give in" to the steroids. Always hoping that we can "mind over matter" whatever symptoms we are experiencing. I told her in an email not to wait to long. If her symptoms progress, take the steroids. Of course, I also understand that "giving in" and having the steroid treatment often makes us feel that we were defeated by the disease. That we couldn't hold it at bay on our own. However, that's not the case. Again, it's all about perspective. I look at steroid treatment as a last resort (because they SUCK). However, I also look at them as the final weapon in my arsenal that I KNOW will beat back the beast. The big guns. When my body is simply too tired, too beat up by the MS to go it alone, it's time for the steroids. Kind of like life in general. When things get tough and the road is bumpy we turn to friends and family. We each have our own personal "big gun" in our personal lives. MY big gun GOD. So tonight, I'll say an extra prayer for her. Not only that she comes through the exacerbation, but that she comes through even stronger than she was before if started.

Mental Mutiny

Today was a quiet, uneventful day. I am waiting to hear from Dr. Rhodes' office in TX. (See link on blog page). Hopefully, Mark and I will be heading to see him within the month. I'm open to trying his program. I'm frustrated with the way the "traditional" MS medication makes me feel, it hasn't stopped the exacerbation's this summer and the thought of more steroids EVER is enough to make me physically ill. Of course yesterdays experience with the neurologist didn't help any. Neither did thinking about it all day today. The more I thought about it, the more angry I became. I wonder what the reaction in the Neurologists office would have been if I had waltzed an hour and a half after my scheduled appointment. Would I have been seen? Not bloody likely. To add insult to injury I also had to pay a $15.00 co-payment for my 8 minutes of his time. I figure that my co-pay alone averaged out to just under $2.00 for each minute he spent with me. Add that to what he will bill the insurance company for a "comprehensive visit". Is it any wonder why there is such discontent with the medical system? Even having medical insurance doesn't guarantee you receive the care needed. I tried to tell myself that as long as the man knows what the heck he's doing it doesn't matter that he never allowed me to ask a question and when I tried to, he ignored me. It doesn't matter that he has the bed side manner of a dead frog. Maybe he was just having a bad afternoon. WRONG. It DOES matter. A lot. I'm the PATIENT. I'm in charge of my health care. I have a responsibility to ME to be knowledgeable about my health and the treatment plan. I also have the right to say NO to any test or treatment. That doesn't make me "difficult". I'm the one who has to go through the treatment and tests. Which means that I'm the one who needs the answers to my questions. I need to know WHY. Not because I'm challenging a physicians knowledge, but because I want to know WHY. Why this treatment instead of another. Why this test if it's invasive and won't give you a definite answer? I look to physicians as the experts in their field, but that doesn't mean I follow blindly along without question. I want a physician who LOOKS at ME! Who would recognize me in the parking lot 10 minutes later because he actually made eye contact and had a REAL conversation with me! I want a physician who actually let's me ask a question. Heck, who ASKS me what I think! Imagine that. What nerve I have...yep, I'm a BAD patient. The worst part of yesterday, and the part that irritates me the most: The fact that I actually sat and waited to be seen for an hour and a half. I should have left after the first 30 minutes. I wonder what it is that convinces us to tolerate being treated like that from the very person you are depending on for care and information? Would I have waited in line at the bank that long? At the pharmacy? At the hair salon (OK, maybe at the salon. I have the BEST stylist). Yep, I'm fired up. (Can you tell)? Of course in my mind the visit would never have happened. After 30 minutes I would have very calmly and tactfully explained to the receptionist that I was leaving. I had scheduled my time for the appointment and it was limited. That I would have appreciated a call to reschedule or move my appointment back when the staff realized he was running so far behind. Then, I would have asked for my co-payment back and I would have left. I would have called my PCP from my car and asked for a referral to another neurologist. Ahhhhh mental mutiny!

New frustrations

Saw my new neurologist today. I eagerly anticipated seeing him. He wasn't the one I wanted to see, but he was the one who comes to my area. I waited 1.5 HOURS after my scheduled appointment time to see him, and then, he spent exactly EIGHT minutes with me. Answered a minimal amount of my questions. Heck, didn't give me time to ASK any! He wants to do testing and then see me again. (No MRI, I can't have one with the cochlear implants). He wants to do a Visual Evoked Potential Test (VEP) and a Lumbar Puncture. (Already said NO to the Lumbar Puncture). Studies show that 85-90% of people with definite MS and 58% of people with probable MS have abnormal VEPs. However, looking at the reverse it means that 10-15% of people with MS can have NORMAL VEPs. I never could understand having tests done that aren't definitive. They can't give a firm diagnosis OR rule a condition out. (Like a Lumbar Puncture for MS). At least the VEP isn't invasive. It's simply having electrodes attached to your head while you watch a black and white checkered TV in a dark room while you wear a patch over one eye, then the other. They measure the electrical potentials that travel down the optic nerve into the brain. What they are looking for is a delay during the transmission of the electrical potentials in the brain. The slowing indicates a demylinated area. Of course, if your demylination isn't in that area it won't be detected. Hence the normal VEPs with 10-15% of MSers. The ONLY definitive test is the MRI for MS (other than a direct biopsy of a lesion). The only definite way to monitor lesions is an MRI. If you can't have one (like me), then most Doctors seems to want to subject you to all kinds of tests. Of course none of those tests will give them answers. The VEP I don't mind. No way am I doing the Lumbar Puncture (better know as a spinal tap). The only thing a spinal tap WILL tell them is that I don't have meningitis or an infection. (Which they aren't looking for anyway)! Can you tell I'm frustrated?? Apparently the next step after the VEP is a follow up visit with him and a referral to start the work up for Novantrone treatment. (I added a link about Novantrone). The journey continues.

The "black box"....

I received an email today from someone who reads my blog. She is facing a health challenge. One not related to MS. However, in addition to her health issue, she is facing a challenge common to many who are dealing with a crisis. Whether that crisis be health related or of a personal nature. That challenge is depression. (I referred to my own recent battle with depression in a recent blog. I called it (depression) the "black box"). In her email she eloquently stated that she is in her "black box" and fighting the desire to "simply curl up in a fetal position". She further stated that reading my blog helps her and she checks it daily. To her, I want to say thank you. I'm glad I'm helping and making a difference. (I also sent her a private email).

The "black box" is a scary place to visit, in the beginning. Then, it can actually become a place filled with false comfort. That's when the "black box" is most scary. It isolates you from life and everyone who cares about you. To anyone who battles Depression or even thinks they might be. PLEASE talk to your doctor. Depression is a serious MEDICAL condition. Unfortunately, there is a lot of negative stereotypes about it in the society we live in. However, like cancer, diabetes and MS, it's an illness. It's also treatable. You don't have to stay trapped in the "black box". There is help and hope. Always remember that tomorrow isn't just another day. Tomorrow is a step FORWARD in your journey. Every tomorrow gives you another opportunity to have a BETTER day, a better life. Another chance to start again. Every day is filled with the new promise of hope, a cure, a new treatment. Never forget that no matter how dark life may seem there is ALWAYS someone willing to grasp your hand....if you simply reach out. Even a blogger.

Stopping to think.....and counting Blessings

Every now and then, when things get frustrating, it's time to re-evaluate. Treatments, plans, goals. Where you want to be and where you want to go. The journey I've had with MS this summer has brought a big change. I'm not talking about the obvious changes. The increased balance issues and walking challenges. I'm talking about ME changes. The one's that really count. CORE changes. I'm still optimistic (at least I sure try to be). I still try to always focus on the Blessings. However, my FEARS changed. I'm not longer absolutely terrified about becoming mobility "challenged". In fact, while it's not a pleasant thought. I really don't think I fear it at all now. My perspective has changed completely. I may not be able to get around as quickly, or even in the same manner as you, but I WILL be able to get around, so I'll STILL be mobile. SO that fear is now gone. The fear of losing mobility has been replaced with the fear of losing my "mind". I find I'm still a lot more forgetful than I ever was. Even on the Aricept. I have a difficult time dealing with the internal frustration I feel when I realize I can't remember something. Or I'm trying to explain something and I can't remember the right words. I find it especially frustrating when I'm trying to pull something from the far recesses on my mind that I KNOW I should KNOW. In fact, I Know I DO know....and I can't pull it forward. That's far worse that not finding the words....I can't find the thoughts. Previously I was someone who could remember an entire month's worth of meetings, times, locations, people to be involved. WITHOUT a planner. Now, I can't remember how old I am. (At least I can remember the year I was born and can do the math). I carry a planner everywhere, not for note taking like I used to, but to actually USE the calendar section. I find that frustrating. Now, making out a deposit slip is a challenge. Simply putting the numbers in the correct columns is a challenge. I KNOW where the numbers are supposed to go, and then put them in the wrong column. So, I try again until I get it right. I refuse to just hand the deposit slip to my husband to do. Stubborn? Maybe. I prefer to think of it as just being persistent. I KNOW how to do it, so I'll try it until I finally get it right. I've been on the Aricept for 2 months and I AM better than I was when I started it. Hopefully, I'll continue to improve. (At least I remember how to use my Blackberry now)! So, every improvement is a Blessing. The fear of mobility issues being removed is a HUGE Blessing. Of course, having a wonderful, supportive husband is the BIGGEST Blessing of all. It's all about perspective!

Dynatron STS

Attempted the Dynatron STS machine again this evening. This time we changed the frequency to a lower frequency as well as placement of some of the electrodes. Instead of just placing the electrodes on my hands, we placed them on my hands as well as my upper arms. I was able to last 2 minutes before I started getting some tingling on my right thumb. Two minutes doesn't sound like a lot, but considering I was only able to last 34 seconds on the previous frequency, 2 minutes in a significant step forward. We're going to try several sessions tomorrow to see if I continue to tolerate the new frequency better and increase the time. (Sessions also have to be a minimum of 3 hours apart). Wish I could say I felt a difference, but like most treatments for anything, it takes time to see any difference/improvement. With MS, sometimes the "improvement" is simply more time between exacerbation's with less residual damage following an exacerbation. Have been experiencing more periods of "numbness" with my lower extremities. Today my right heel was numb for the majority of the day. Made walking a weird experience. The muscle spasticity is much improved over this time last week. Have had periodic episodes, but nothing compared to last week. Thank God. Seems that lately, everyday the journey has taken me into new directions. Whether that direction being the experience of trying an "alternative" treatment or having new symptoms. That's just part of MS, or life in general for that fact. After all, doesn't everyone wake with the uncertainty of not knowing what road our individual journey will take us on that day? Will the road be smooth and straight or filled with sharp curves and bumps? MS doesn't guarantee a more difficult daily journey any more than a "healthy" person is guaranteed an easy one. That's where personal perspective and trying to maintain a positive outlook becomes so important. Often, in any of our lives, our attitude and outlook are the only things we have any control of at all.

Research

There are so many treatments available for MS patients. Both traditional and "non-traditional". The most difficult decision for each of us is choosing the treatment that is best for us. What works for one, may not for another. Decisions are made based on lifestyle, quality of life, side effects and financial considerations. What is an important factor for one person isn't for another. Opinions often vary greatly from patient to patient and physician to physician. I tried the Dynatron machine again. Twice yesterday. The first time I was only able to last 29 seconds on it, and the second 34 seconds. Of course, this, as all other treatments, isn't meant to be a "miracle cure" and is something that must be utilized over time. The challenge is, since it is a treatment not covered by insurance. Is this something I will follow up with. It would require a trip out of state, treatment, testing, airfare, hotel etc, as well as purchasing the machine. All out of pocket since, even thought he machine IS FDA approved, it's not a "traditional" MS treatment. Therefore, not a covered benefit. How frustrating is that. They will pay the amazing price the pharmacy gets for my Rebif injections every month. (Not to mention all the other meds). Yet, won't even consider a treatment, that if it works, would save them almost 20,000 a year for my injections alone. Kinda like the insurance mindset of "we won't pay for a weight loss program, but we'll pay for the heart cath and open heart surgery after you have the heart attack that losing weight most likely would have prevented. Geesh. I'll be trying the machine a few more times over the next few days. I see the neurologist on Tuesday and I will be discussing the Dynatron therapy along with other options. This has been a tough summer with exacerbation's, so I'm anxious to hear what he will have to say. I'll also be resuming my physical theraphy schedule of 3 times per week, and talking to the neurologist about adding occupational theraphy as well. Trying to keep one step ahead of MS tends to be hard work when it rears it's head!

Trying New Things

I didn't post yesterday. I enjoyed an hour massage, did some shopping, had dinner with family then tried a new treatment for MS. I'm not sure how it all really works yet. I'll post all the information as I learn it. Basically, your hooked up to a machine (Dynatron STS) that uses electrical impulses at acupuncture and acupressure points to stimulate the nerves to release neuropeptides. Neuropeptides are chemicals responsible for a lot of neurologically related functions. So, the theory is that if you can induce the body to make more of these neuropeptides and increase the circulation of oxygen in the blood (the machine also works to improve circulation and with MS improved circulation will only help myelin sheaths) you will see a decrease in pain and an improvement in neurological function. There are very specific points at which the electrodes and magnets are placed. You are then connected to a machine and the frequency, pulse rate, etc. are set. I lasted about a minute (the goal was 7) before we stopped as I started having a weird feeling in my right hand. I'll be trying the machine again tonight along with learning a lot more about how it works and what it does. If you would like more information go to paindefeat.com. It's the web site of the physician, Dr. Rhodes, who developed the machine. He designed the machine for use with patients who suffer from chronic pain disorders (with tremendous success).

"Pretty darn good"

No major episodes of spasicity last night. Amazing what a difference a night without them makes. Especially after a run of 4 nights in a row. Slept well. Woke up thankful that I actually slept and had a pain free night. Of course, my body needed time to recover. I woke feeling energetic and rested, then TWF arrived with lunch. It was all I could so to stay awake. So, I gave in and decided to take a nap as soon as lunch was over. I awoke several hours later and was time to get up and dress for dinner! Lasted through dinner (if flourless chocolate cake wasn't on the desert menu I would have passed on desert and went back to bed), barely. Mark brought me back to our room and I'm quickly blogging before turning in for the night. (Mark went back out with the family). Time has taught me not the fight the TWF when it hits. Especially after the past week. Sometimes the TWF is simply my bodies way of taking the time it needs to recharge and recover. While I'm tired, I feel pretty darn good for a change. I was beginning to forget what "pretty darn good" feels like!

Looking on the bright side.

Another pain filled evening last night with spasticity. At least today is another day and, for the moment, the spasms are finished. Of course, from the waist down my body feels like someone beat the H*&^ out of me. You know. If we could figure out a way to have "gentle" spasicity for about 30 minutes per day on all major muscle groups, we'd all be in great shape with wonderful "hard" bodies, and never have to hit the gym. Gee you'd think there would be SOME benefit for all the spams and pain!

Another wonderful side benefit to all the steroids of late. My hair is falling out! In handfuls. Well, I always wanted to be able to change my look on a daily basis. This is a wonderful opportunity to try out wig wearing. Hmm....today brunette bob.......tomorrow blonde with flowing locks. Hey, you gotta look on the bright side of everything!

Another challenge

Been a tough few days with the muscle spasticity. All my "usual" symptoms seem worse lately and the muscle spasticity is not different. Thankfully, the muscle spasticity isn't a symptom I have frequently. Usually. Last nights episodes lasted longer than usual and well into mid morning today. During and following the muscle spasticity I had a new symptom. One I had never experienced before. Hopefully, an isolated incident. It's now gone away, although it took about 4 hours for it to resolve. Following a series of particularly bad spasms that primarily effected my left foot, my left foot from the knee down went completely numb. When it actually happened, I wasn't complaining. It was after I uttered a particularly fervent pray to God to "PLEASE STOP THE PAIN". That the leg went numb. The pain simply went away. At first I just thought the spasm had suddenly stopped. Until I looked at my foot. The tendons on the foot were still pronounced, my big toe was still drawn to the right and my other toes were still spread and drawing towards the left. Clearly the muscles were still spasming quite intensely. However, I felt NOTHING. I asked Mark to rub my foot. He did, and while I felt him touching the skin I couldn't feel anything below the skin. My foot was numb! I asked Mark to rub HARD. (Normally during a spasm I can't stand ANY pressure (massaging or rubbing) on the muscle. It makes the pain even worse. Mark said he could feel the muscle balled up tight. He started doing deep massage to see if he could get it to ease up. I didn't feel a thing. We then realized the numbness extended all the way up my leg to the knee. A mixed blessing. Frankly, I was so relieved the pain had stopped that at that point I didn't care that my leg went numb. It wasn't until I tried to walk on the leg and realized I couldn't that I got more than just a bit apprehensive. No way was I going to panic. I figured I'd just rest and see what happened. It took about an hour before I could walk on the leg (relying totally on the cane). Now, 7 hours later all the feeling is back and the walking is better. Wouldn't dream of attempting to walk without the cane though. To be honest, while the "symptom" is a bit disconcerting, I'm not freaked out about it. It had never happened before. I was actually RELIEVED it happened as the pain stopped, and heck I PRAYED for the pain to stop. Time will tell whether this was a one time answer to an immediate prayer, or this is a new symptom and an indicator of progression. I see the Neurologist a week from Tuesday so I'm sure he will have some answers for me. Time goes on and the journey continues.

MS and Muscle Spasticity

This ia what muscle spasticity looks like.

As I'm already blogging before 6 am on a morning that did NOT require me to be up all freaking night for a job related issue, it can mean only one thing. MS strikes again. I'm irritable, tired, frustrated, sore and pissed off. That being said, I'll move on. No two people are effected by MS in the same way. Sure, the actual disease process is the same, but the symptoms and severity of the disease can vary greatly patient to patient. Some MSers have vision issues, some don't. Some lose their hearing, some don't. The same with mobility issues, bladder and bowel issues etc. It depends on where the location of each person's lesions are. The location of the lesions determines which of the wonderful (notice the sarcastic pissed off wit this morning) myriad of MS symptoms an MSer will have. Generally speaking, I've been pretty lucky. Other than my hearing and a very slow progression of mobility issues, MS has been "kinder and gentler" than it could have been. However, for me, there is one symptom that I battle that takes every bit of strength I have to fight when it flares. Unfortunately it started raising it's ugly head three days ago and hit full force last night. Muscle spasticity. What's that you ask? In basic medical terms: it's the involuntary contractions of muscles and increased muscle tension. In MY terms: Muscle Spasticity is an unbelievably PAINFUL several days (for me) of such intense muscle cramping in my legs that I can't walk, straighten my legs during the 15-20 minute severe attack which occurs about every half hour for hours on end. This in turn means that in about an hour I get freaking 20-30 minutes of "pain free" time in which I stop crying, hobble to the bathroom, crawl back to bed a pray to God to stop the cycle. This morning the muscles are continuing to spasm non-stop. I've taken everything I can possibly take for the spasms. At this point I think the actual muscles are so exhausted THEY don't have enough energy left to fully contract anymore. They are simply spasming. Kinda bizarre to watch. I can actually see the individual muscles contracting and relaxing under my skin. (Think back to the scene in Alien, you know the one). They are no longer painful, just annoying. (THANK GOD). For the past two days the spasms were limited to all the muscles below my knees. Feet, calf's, shins etc. Last night they moved up to involve both legs entirely. Including the hips. That's the first time it moved so high. I've had them reach the quadricep muscles on the thighs before, but never the hips. Ahhhh. A new experience. Gee.....one I could EASILY have done without! . It is what it is. Hopefully, the twitching my muscles continue to do, even as I type, will continue to wind down and the pain is over....for now. Past experience has taught me it will take days to recover. My legs will be painful, walking will be more of a challenge, as will balance. At least I've been through this enough times to know what to expect. I just pray that the cycle doesn't continue tonight. I also pray that this isn't the beginning of yet another exacerbation. If so, it will be my third since mid June. I'm not up to round three of steroid in 6 week. So, I'll march forward. "This too shall pass". I'll take it easy this morning. Trying to rest. I'll set my alarm for 8 and make myself get up and start my day. I'll take my time, use my cane and get things done. Just another day in the journey with MS.